‘No one agrees except for those of us who have it’: endometriosis patients as an epistemological community
Bibliographic record
Abstract
This paper contributes to the literature on patients' claims-making work by analysing the epistemological strategies and standards used by members of an endometriosis patient community. It draws upon focus group research with members of a support group for endometriosis sufferers, and an open-ended survey of an e-mail list for women with the disease. Lynn Hankinson Nelson's (1993) concept of epistemological community is used to examine standards and practices for developing and evaluating knowledge used by women with endometriosis. Particular attention is paid to the use and centrality of the notion of experience within this community.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.043 | 0.070 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.002 |
| Science and technology studies | 0.020 | 0.076 |
| Scholarly communication | 0.015 | 0.027 |
| Open science | 0.003 | 0.022 |
| Research integrity | 0.009 | 0.013 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".